We received Parker’s diagnosis in 2018 at the age of 19. The year prior he had a very large Schwannoma removed in his upper abdominal area. We noticed this lump there for some time and the Local dr’s kept watching it. It started to become bothersome so surgery was recommended. Little did we know that this surgery would start the beginnings of our NF2 journey.
The picture below shows the large tumor removed. After the tumor was removed the surgeon suspected NF2 and we went to genetic testing and it was confirmed. He is the first in our family to have this diagnosis. You can only imagine our shock and disbelief when we learned of this NF2 diagnosis.
We currently are seen by his team of Dr’s that we travel out of State across country every 6 months for repeat brain and yearly Spine MRI’s.
He has had gamma knife radiation to his right sided hearing nerve tumor in August of 2018 and started Avastin in April in 2019. An upcoming surgery to remove a tumor in the brachial plexus area and one in his upper back are scheduled in March 2021. He has numerous spine tumors that are just on a watch and wait. We are thankful for connecting with NF2 Biosolutions and believe whole heartedly
that a cure will be found. Currently there is no cure.
Parker will not let this condition stop him from enjoying live and truly does live life to the fullest.
I am honored to be the KY Ambassador for NF2 biosolutions to help my son and others to help educate, spread awareness, raise funds and to hopefully create a network of support for each other. Let’s help end NF2 together. If you would like to donate in honor of Parker please click on the link. We thank you for all your support.